It's been 1.5 years; 18 months; 546 days; 13,104 hours, et al. without him. But who's counting. Fact is, I'm counting. I've moved beyond counting the hours and the days, but I'm still counting the months. My social worker reminds me that my grief journey is still very new. She gives me permission to be hyper-focused on the passage of time. Actually, my grief journey isn't new, it began over 16 years ago. Nevertheless, this grief journey is new and I appreciate more than she'll ever understand the support of this person who validates my extreme mood swings as I trudge through this interminable grief journey.
Some may perceive the picture above as a sad picture. I do not. I have this picture on my desk at work as a reminder of the gift it represents. As Jack's mom, I had the privilege of not only ushering my beautiful boy into this world, but also the extraordinary privilege of holding him securely in my arms as he was ushered out of this world. Would I have preferred to not have had to experience the latter privilege at all? Of course. But Jack wasn't born with the gift of health and it was not his destiny to live out a long life. When I think of all the possible scenarios that could have played out on Jack's last day, I could not have orchestrated a more perfect passing than that depicted in the above picture. And that picture might not have happened but for a telephone conversation I had earlier that day with Jack's neurologist. When I called her to let her know what was going on with Jack and where we thought things were heading, I will never forget her voice cracking as she commanded "You make sure you hold your boy". What a gift those words were because in the moments of Jack's final hour it was all very surreal and I wasn't in any frame of mind to think clearly about what was unfolding. When they moved Jack's bed to the Sanctuary room, the only thing that was clear were the words "hold your boy". And I did. And I will be forever grateful for Jack's neurologist and for my niece who captured this moment unbeknownst to me at the time.
Last week at work, I was going through my archived emails and happened upon an email that was sent to me in 2010 by one of the Ryan House staff. She told me that they were beginning the process of collecting stories about their experiences with families so that twenty years down the road, they can share their journey. Here is part of what she wrote about Jack:
When I first met this wonderful 11 year old, I wondered what he thought of coming to Ryan House. Would he be as comfortable as he is at home? Would he like to try new things? How could we make this the first of many great weekends together? While he is unable to tell us verbally what is on his mind, it is clear his eyes tell us all. I first learned this while sitting with him, examining the laser stars we had projected on the walls. As I pointed to various ones around the room, he watched and looked at me as if to agree they were creating a magical place just for him. I recall the night nurse telling me that he got such a kick out of her Spongebob impersonations...who knew she could sound like Spongebob?
While out and about in his wheelchair the next day, enjoying the sunshine and the playground, we soon found out that one of his favorite things is to be read to...and not just by anyone...but by our volunteer Beverly. Something clicked between those two. It wasn't long before she was reading to him for hours, gliding up and down the halls together, and most of all dancing with him in the music room. She turned the player piano on, gently took hold of his hands, and began swaying and twirling away. His eyes were just fixed on her, and there was a gentle smile that could not be denied.
I don't know if Jack's story is still among the archives of the Ryan House stories, but I do know that this was something I needed to read. I needed to read words written about Jack at a time when he was still here with us. I needed to hear how Jack touched lives and made a difference. I miss him more with each passing day, but I find some comfort in knowing that "We can be. Be and be better" because he existed.
I miss him. I ache for him. I cry for him. Always.
Onward it is.
I miss him. I ache for him. I cry for him. Always.
Onward it is.
